9 Months Old

Titus turned 9 months old last week. He weighed in at 14lbs and 1 oz at his 9 month check-up and he is doing incredibly well. He's been off oxygen during the day for a month. At night, his oxygen sats tend to sink after he goes into a deep sleep, so we keep him on oxygen as a precaution. Titus did have a sleep test this past week to see if there might be any underlying reason why this was happening, but as you might expect, he did wonderfully all night without oxygen for the test. We have not received the final results from the doctor though, so we will wait and see if they detected anything.

Now that we have Medicaid coverage, we have started back to therapy 4 times a week. Therapy wears him out (it's a 30 minute session), but he is a such a trooper. He is showing improvement and strength which is so encouraging. Developmentally, Titus is around 3 months; Socially, he's at a 5 months stage. Considering all of his needs and the fact he spent close to 3 1/2 months in the hospital after birth, we feel this is great. We can see the improvements and he is gaining in head control, arm strength, and showing that he is using his stomach muscles when he grasps his feet. We are also working strengthening his arm muscles. He's starting to push and pull with them his arms.

We have also received our Medically Dependent Children's Program approval which provides for nursing care throughout the week. We will have a nurse come 2 nights a week to stay with Titus through the night which allows for us to get a solid, uninterrupted night's sleep. Last Wednesday night was our first night with the night nurse. Her name is Clarice and she is from Cameroon and it looks like she and Titus have hit it off. She said Titus woke around 1am and started playing in his crib, so she picked up him and held him the rest of the night. I think he may get a little spoiled here. Becky is still working on our schedule for daytime nurse aid visits (of which we can have up to 30 hours during the week). This will be very helpful once home-school starts up full-time.

There are times the last 9 months seem to be a blur. Someone told us early on that the first year with a special needs child is the hardest. And, I can see how that can be as you adjust to all the changes. It truly changes so many areas of your life: your hopes and dreams, your vacation plans, your free time, your financial plans (I am now having to plan for Titus retirement along with my own). There are still moments of grief that sneak up on us and can be overwhelming. When I see most 9 months old can do and what Titus can't do, there are times I'm discouraged. But, I have had to learn that "all things work together for good" and to "choose you this day who you will serve". I can choose to succumb to the grief or I can choose to submit to God's plan - even when I don't fully understand. But any moment of grief we have melts away when Titus is in our arms. His smile when we rub noses thrills my soul. The way he snuggles in after he has been fed shows me his trust and contentment in his father. His laugh when his brothers play with him is the sweetest sound.

Please pray for these things over the next few weeks.

• Our appointment with the pulmonologist as a follow-up to the sleep study.
• Titus breathing at night will grow stronger.
• Hearing aids and hearing aid therapy will start soon as we prepare for cochlear implants.
• Our vacation over Labor Day to Family Camp. As a family, going to family camp is one of the highlights of our year. But, it's a long drive to Indianna and back, and the the time in the car, change in schedule, differents senses/smells for Titus, etc - are all overwhelming for him. Pray for his comfort and health on the trip.
• Titus appointment in September with the glaucoma specialist. When we return from Family Camp, Titus has a follow-up appointment in Houston. 3 months ago, his levels were in the normal range. We pray they still are and no additional surgery will be necessary.